Dizziness migraine comes and goes

Thank you for responding. I will answer your questions.
migraines always involved? No. 25% of the time I get a rainbow migraine that comes right after the ear makes the loud noise. The rainbow migraine takes away part of my vision. It does not hurt. Wherever I am, I have to stop and do nothing til it is over. 25% of the time I get a headache (wouldn’t call it a migraine but enough to take tylenol) and it happens when the dizziness ends. 50% of the time I get no migraine or headache.

The allergist took the full battery of tests and found I was alergic to NOTHING. He then gave me a “poison” that everyone reacts to and I did not react. Then he gave me a blood test to confirm his suspicision that it is impossible to know what I am allergic to and that I am immune suppressed and don’t make antibodies in response to any attack. That is why I have to take infusions every 7 days. The ENT wouldn’t guess what allergy it could be, just thinks that it could be an allergy.
What am I doing when I get the warning. Obviously, the warning happens when I am awake. Could be driving in the car (in which case I go right home). Could be I am in my room walking around. Could be I am reading or doing housework. I have had a long time to journal the triggers and have found nothing in common. Not computer or lights or time of day or weather. This year it has been happening every 3-4 weeks. I am 75 so it is not hormonal. A few times I will awake in the middle of the night with the vertigo and have missed the warning.
At the moment of the warning, I get things ready by my bed: water, crackers, applesauce. I am never sure how long it will last but I always want to have something there. I take Dramamine and Sudafed as well as Zyrtec and have Benadryl ready. I do believe all of this helps to make it only last 12 hours. Two years ago, the spell would be so bad I could not even drink water and could not walk. Now, I can find my way to the bathroom and can sip water and I don’t vomit. I do think the pills help. If I had a valium, I would take that as a few years ago, that was tried and it really helped. At this time, doctors are not prescribing that kind of medication.
Vertigo. It used to be so bad. I was put in the hospital one time because I could not do anything. Also was in the ER one time and they gave me zofran and valium heavy doses to help but not relieve but was enough to get me to move. The spinning can be horrendous. Then again, it can be just movement instead of spinning. Things move to the left and I blink and they start over from their original position and move to the left again and this goes on for hours. Sometimes it can be up and down. Sometimes forward and backward. I am in the twilight zone.
Once the attack starts, I am immobile for the 12 hours in a chair. I keep my eyes closed. When I open, I spin. When I move, I spin. I do not lay down. I have a lung condition so I am always in a chair at night and that is the best position to be in for the attack.
You mention my neck. No doctor has asked me about that. BUT yes, my neck tightens up greatly when the attack begins. My shoulders rise up. I think that is in response to what is happening to me. I try to relax but it is nearly impossible to do so.
No fluid ever comes out of the left ear. I do the saline rinses daily. But I can always hear the water if I plug my nose. The ENT says it probably is water in my inner ear. Hearing test done several times and I don’t hear high pitches but it is common for my age and it is that way in both ears.

The ear does not hurt at all. It has a very loud noise always the same note.
I was in an accident 20 years ago (brain injury, hit my eyes and frontal lobe and then the back of head) and was in a coma and damaged C4-C6, bulging disk, needed plate put in but didn’t get it because I can’t have surgery with my failed immune system. Also my cranium came off of C1 slightly and they put it back on with guided xrays. I always have upper back pain but deal with it.
Why in infectious disease area on this site? That was a mistake. I was researching my immune system problem and didn’t know I posted it there.
One more thing, when the dizziness/vertigo is in progress, my eyelids (both) are tender to even the slightest touch.
I envy that they give you valium. That is what I got in the ER and it was a life-saver. But doctors won’t give me any. I already take doxypin and klonopin each night for sleep. Neither is the cause of the problem because I just started the doxypin. Since my brain injury 20 years ago, I have little ability to fall asleep. I can go many days with no sleep but I feel crazy about day 2 ½. So they have given me many sleeping pills over the last 20 years and have to change them. the current one is Doxypin 10 (everyother night it is dayvigo 10) + magnesium + klonopin 1 + melatonin. Still difficult to sleep and it doesn’t stop my vertigo.
I was away from home a year ago when I got an attack and I wanted to die. I didn’t have my pills. That one lasted 2 days. I forced myself to sip water and I couldn’t even to to the restroom.
Has the doctor ever told you that you could loose your driver’s license? Since I have plenty of warning, I don’t think that is fair. Is there a way to discuss off line?

Thank you for responding. I will answer your questions.
migraines always involved? No. 25% of the time I get a rainbow migraine that comes right after the ear makes the loud noise. The rainbow migraine takes away part of my vision. It does not hurt. Wherever I am, I have to stop and do nothing til it is over. 25% of the time I get a headache (wouldn’t call it a migraine but enough to take tylenol) and it happens when the dizziness ends. 50% of the time I get no migraine or headache.

The allergist took the full battery of tests and found I was alergic to NOTHING. He then gave me a “poison” that everyone reacts to and I did not react. Then he gave me a blood test to confirm his suspicision that it is impossible to know what I am allergic to and that I am immune suppressed and don’t make antibodies in response to any attack. That is why I have to take infusions every 7 days. The ENT wouldn’t guess what allergy it could be, just thinks that it could be an allergy.
What am I doing when I get the warning. Obviously, the warning happens when I am awake. Could be driving in the car (in which case I go right home). Could be I am in my room walking around. Could be I am reading or doing housework. I have had a long time to journal the triggers and have found nothing in common. Not computer or lights or time of day or weather. This year it has been happening every 3-4 weeks. I am 75 so it is not hormonal. A few times I will awake in the middle of the night with the vertigo and have missed the warning.
At the moment of the warning, I get things ready by my bed: water, crackers, applesauce. I am never sure how long it will last but I always want to have something there. I take Dramamine and Sudafed as well as Zyrtec and have Benadryl ready. I do believe all of this helps to make it only last 12 hours. Two years ago, the spell would be so bad I could not even drink water and could not walk. Now, I can find my way to the bathroom and can sip water and I don’t vomit. I do think the pills help. If I had a valium, I would take that as a few years ago, that was tried and it really helped. At this time, doctors are not prescribing that kind of medication.
Vertigo. It used to be so bad. I was put in the hospital one time because I could not do anything. Also was in the ER one time and they gave me zofran and valium heavy doses to help but not relieve but was enough to get me to move. The spinning can be horrendous. Then again, it can be just movement instead of spinning. Things move to the left and I blink and they start over from their original position and move to the left again and this goes on for hours. Sometimes it can be up and down. Sometimes forward and backward. I am in the twilight zone.
Once the attack starts, I am immobile for the 12 hours in a chair. I keep my eyes closed. When I open, I spin. When I move, I spin. I do not lay down. I have a lung condition so I am always in a chair at night and that is the best position to be in for the attack.
You mention my neck. No doctor has asked me about that. BUT yes, my neck tightens up greatly when the attack begins. My shoulders rise up. I think that is in response to what is happening to me. I try to relax but it is nearly impossible to do so.
No fluid ever comes out of the left ear. I do the saline rinses daily. But I can always hear the water if I plug my nose. The ENT says it probably is water in my inner ear. Hearing test done several times and I don’t hear high pitches but it is common for my age and it is that way in both ears.

The ear does not hurt at all. It has a very loud noise always the same note.
I was in an accident 20 years ago (brain injury, hit my eyes and frontal lobe and then the back of head) and was in a coma and damaged C4-C6, bulging disk, needed plate put in but didn’t get it because I can’t have surgery with my failed immune system. Also my cranium came off of C1 slightly and they put it back on with guided xrays. I always have upper back pain but deal with it.
Why in infectious disease area on this site? That was a mistake. I was researching my immune system problem and didn’t know I posted it there.
One more thing, when the dizziness/vertigo is in progress, my eyelids (both) are tender to even the slightest touch.
I envy that they give you valium. That is what I got in the ER and it was a life-saver. But doctors won’t give me any. I already take doxypin and klonopin each night for sleep. Neither is the cause of the problem because I just started the doxypin. Since my brain injury 20 years ago, I have little ability to fall asleep. I can go many days with no sleep but I feel crazy about day 2 ½. So they have given me many sleeping pills over the last 20 years and have to change them. the current one is Doxypin 10 (everyother night it is dayvigo 10) + magnesium + klonopin 1 + melatonin. Still difficult to sleep and it doesn’t stop my vertigo.
I was away from home a year ago when I got an attack and I wanted to die. I didn’t have my pills. That one lasted 2 days. I forced myself to sip water and I couldn’t even to to the restroom.
Has the doctor ever told you that you could loose your driver’s license? Since I have plenty of warning, I don’t think that is fair. Is there a way to discuss off line?

@magwil01 If you have had issues with your neck such as a whiplash, there could be a physical reason for your vertigo episodes having to do with spine and skull alignment. I am a spine surgery patient and had a cervical fusion. Prior to my surgery, muscle spasms were rotating my C1 & C2 vertebrae independently which caused vertigo. Inside the vertebrae on each side is the vertebral artery that is part of the blood supply to the brain. If that is getting stretched because vertebrae are t twisted, it can affect blood flow.

It would be worth asking for a physical therapy or spine evaluation even if you are not going to be a surgical patient. I just saw that you have had a significant cervical spine injury some years ago. Perhaps a physical therapist could help. If you get the vertebrae properly aligned by working on the muscle spasms, it can loosen all the tightness.

I don't know why your doctors are not considering your injury as a possible cause. I don't have vertigo anymore. I think a physical therapist who also does myofascial release would be able to help. Here is our discussion on MFR.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is a provider search at http://mfrtherapists.com/

I was with a spine clinic for many years and spent about 5 years in rehap with a variety of therapies. They did a lot of tens and massage. I agree the myofascial therapy would be helpful. I did this at my expense for about 6 months. Extremely painful and was $80 for 20 minutes. Insurance wouldn't cover it. I have military insurance. From the link you provided, there isn't one advertised within a 3 hour radius of where I am. I also can't see a chiro because of the lack of density in my spine. The hammer can be done but it is not effective. I forgot to mention I have Ehlers Danlos - connective tissue disorder. There are people around her that do massage but none that understand the myofascial. :/ thanks for suggestion.

magwil01, are migraines always involved? What do the ENTs say you are allergic to? I have found that there must be 1,000 different definitions for dizziness. What are doing when you get the warning? Do you take any medications at the moment of the warning? Do you have vertigo? Also, 1,000 different descriptions for this.
Do you lay in a specific position? The fluid in left ear, does it drain, crust, hurt, infected? Are your migraines always left sided with fluid in the ear? What condition is your neck in? Bone spurs, bulging discs, loss/increase in curvature? I find it interesting to see a post like this, in the infectious disease forum, is there a specific reason why?
I have severe complex migraines, just means, left, right, both, neck up back of head, behind either ear. I have constant bzzzzzzz in both ears, then random high pitched narrow pinging that lasts about 15+- minutes, not painful. Then random jolts of dull pain all around one ear at a time, lasts 30 minutes-5+- hours, laying on heat works pretty good. Vertigo, 2 types. Mostly has to do with the way I lay my head down. Until 2 years ago, they only happened at home. Now, it's happened on the X-ray table (2x), same at dentist. I get none to very little warning. When it hits, I must immediately get on the floor, curl up in a ball and grab something that won't move, like headboard, leg of X-ray table, and squeeze my entire body as hard as I can, I have very weak wrists. Get Valium and meclizine in me FAST. it is absolute hell if I move. I will add Doxepin, to help put me to sleep (antidepressant or anxiety I don't remember cuz I don't use it for that reason) Average length is 4-12+- hrs. Gratefully, I am able to put myself to sleep, I could not survive 12 hours if I was awake. When it happens away from home, it freaks everyone out. Because, they don't want me on the floor, " it's not clean "...Like I am thinking about clean. Thank goodness I don't leave the house without my husband and meds and water.
I really am interested in your answers, if you want to share. Shelley